The French translation of this essay is available on OWNI, as the first installment of my column Addicted To Bad Ideas.

While studying urban violence, I bumped into data artist and TED fellow Salvatore Iaconesi (aka xDxD.vs.xDxD), who was working on some impressive riots visualizations. A couple of weeks ago, he published a video on his website bearing quite upsetting news…

Despite my initial disbelief, that was not a hoax, nor a situationist artwork. Admitted to San Camillo Hospital in Rome and diagnosed with a brain cancer located in his frontal lobe, Iaconesi was facing limited therapeutic options (surgery, chemo or radiotherapy) and a poor prognosis (gliomas are almost never curable).

Determined to look for further advice, he grabbed his medical records and headed back home. Where he discovered his MRI and scans were in proprietary format… Luckily the self styled “software pirate artist” and creator of the collective Art is Open Source, had a couple of hacker tricks up his sleeve. He cracked the files, put them online, invited feedback from medical experts and laypersons. In a couple of days he started receiving everything from get well emails, to scientific literature references, to health professionals contact information, to tips for cutting-edge therapies. Of course, it was a mixed bag. So he decided to map, sort out and analyze these disparate contributions by means of a data visualization tool of his own design. The scrollwheel he now updates daily on his website is a navigable graph providing access to medical records and relevant information delivered by the online community rallied around his “open source cure”.

Open cure and the Medicine 2.0 Zeigeist

The cultural significance of Iaconesi’s case is manifold. The most straightf orward way to address it would be to focus on the privacy implications of his online quest for an open cure for cancer. Is the sharing of medical records and the crowdsourcing of a treatment indicative of a shift in our relationship to the personal dimension of illness? Although the artist’s decision to “go open” about his condition is perhaps appealing for the press running the usual media circus around him, this question is far from original. Prominent cancer survivors (the likes of Jeff Jarvis or Howard Rheingold) have long argued that there’s a curative potential in Internet “publicness”. The creation of networks of people providing emotional support and sharing experiences as well as medical advice is hardly a novelty. This resonates with the experience of millions of cancer bloggers and discussion forum members, documenting their lives and daily struggles online.

Who wants to appropriate the so-called “eHealth revolution” and put it to commercial use? Just have a read through this scary bit of pharmacom fireside chat freshly published on The Pharmaceutical Executive Magazine website – then we’ll talk.

Thus spoke Sarah Krüg, from the Medical Education Group at Pfizer. Patients empowerment via online databases, open information sharing and web-based self-help groups represents a business opportunity for pharmacoms (but then what doesn’t?). The danger that the biomedical monopoly over health care be replaced by an even more pervasive pharmaceutical merchandising is a clear and present one.

Apomediation and Medicine 2.0 have to proceed in close association with a big dose of vigilance. Vigilance to prevent astroturfing in online communities. Vigilance to be aware of drug-pushing. Vigilance to avoid that bridging the digital divide (the age, sex and socio-economic status gap in accessing online information) doesn’t result in creating a new “eHealth divide” between those who have access to quality online information about health care – and those who are prey of Big Pharma disinformation.